For 4 months I've had slow developing low back pain, which has now spread to my pelvis like a gripping ache to the outer edges of my hips in the last few weeks. I reported the original low back pain at my Rheumatology pharmacy appt in Nov and after all the red flag questions were passed, I was told if my 2-3/10 pain got worse to see my GP. Well it did get worse, up to a 5/10 and it was persistent. But it was Christmas. So I made a plan with myself to keep swimming consistently and do pilates and NHS back pain stretches in the morning and before bed. I even bought a new supportive recliner chair. If the pain was still there by the new year I'd go to the GP.
Well, at first it was seemingly getting better. I was convinced it had to have been muscular, but then it came back with a vengeance. It was waking me and aching and sometimes I'd be near crying at 3a.m. But then I could have a few days where there was just a focal point of pain and the rest felt ok. That was before the bizarre and debilitating groin pain (of my last post, which a few of you were so helpful with, and which lasted 2 days then disappeared), that gave me the final impetus to go to the doc.
Turns out my GP decided I was actually a red flag because I have had cancer in the past. So I had my lower lumbar and pelvic x-rays on Tuesday, though I fully expect those to be all clear for anything cancerous, and because I have a hormone report every year due to HRT, I know that I have enough oestrogen to cover bone health, which must mean Osteoporosis is off the table. I'm 50 years old, am not overweight and have full range of motion (except when I had the groin pain).
The thing is I have never had a mystery body event (and I've had many as we all have on here) that I've not been able to get a pretty good grasp of myself by researching. But try as I did, I could not find any match for my particular back pain. A slipped or bulging disc did not match as far as I could tell and there is no radiating pain as in sciatica. And so I was beginning to panic that I was going to be told I must be depressed. And that would make me cry in the office and prove the very point..
However, last night I stumbled upon a couple in depth articles on side-effects of Mycophenolate and found that back pain is on the list. This wasn't totally convincing until I found that pelvic pain is also on the list and that both are delayed symptoms. I've been on MMF since May with a month off to change from Myfenax to Cellcept. So for much of the rest of the night I was almost elated until I realised that would mean I would have to either put up with this pain, which is getting worse, or go OFF the mycophenolate, which has been a god-send for me.
I'm due any day for my next Rheumy appt, just don't have the letter. I'm aiming to go armed with this info and pray she has had patients with this as a side effect before, but I fear it's a long shot. So I'm wondering if anyone here has experienced this to add to my amo... And to fill me in on what the options are if you have.
Thanks so much for reading.
Panda x
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I just went on our surgery's website to check my regular MMF blood results and found my Lumbar X-ray results. Detailed report should be next week, but this is the summary.
XR Lumbar Spine : Borderline
There is widespread early signs of
degenerative change within the lumbar
spine including osteophytes and facet
joint sclerosis.
I'm not even quite 50. Is this something that happens with connective tissue disease? Because though I might have felt a slight twinge of this back ache here and there over the last 7 or 8 years, it has changed dramatically these last 4 months.
Sorry about all this panda...i think you’re reacting to this very sensibly/proactively....you may already have noticed from my recent posts that i have a lot of overlapping early onset top to tail spine conditions diagnosed, including those noted in your latest report.
I’m 15 years older, and my spine degeneration is correspondingly progressed. By 50 i’d already had to have my pain consultant perform 2 ops (bilateral facet joint denervations to all the cervical, lumbar, sacral spine aka radiofrequency ablations...which are more permanent than nerve blocks). I’ve been on daily myco since 2014, and it started to help damp down the inflammatory aspects of my spine probs, daily 10mg pred does too. But that didn’t stop the degree of degeneration & pain progessing
Without the help of my combined lupus meds, my spine pain would definitely be a lot worse. As my rheumy clinic says: AID inflammatory process is attracted to anywhere in the body suffering chronic pain syndrome, so lupus joins in the long-running pain party in my spine/sacrum/pelvis, which is why my lupus meds can help..this is v lucky for me cause i have a long history of hypermetabolising all the prescrip analgesics on the upper rungs of the pain meds ladder
I forget: are you diagnosed with any version of hypermobility? Cause my Ehlers Danlos adds to my spinal/sacral/pelvic probs...due to global ligamentous laxity etc the wear & tear degenerative changes are more early onset and severe. i studied yoga, tai chi, pilates & the Alexander technique from the 1980s onwards to help me manage this stuff...all that + my physio regime, NSAID gel, max dose daily paracetamol & wearing rigid lumbosacral brace i call ‘the garden gate’ + bespoje orthotic insoles & sometimes a cervical collar, a cane etc are key to my remaining functional, but even so i walk like a 95 year old....and feel sore all the time
Next week i see the neurosurgeon re L4 foraminotomy & laminectomy because the nerve root is nw trapped (foraminal stenosis) not looking forward to this...
Hope something in there can be useful. Am sure you’ll get helpful replies
Please let us know how this goes as you figure it out
Coco, thank you so very much for your helpful and understanding reply. I read all your posts and am in awe of your strength through the enormity of what you endure (and have endured your entire life!).
Ok -- so would you say (are you saying) that you feel that your spinal problems are due to Lupus? Perhaps this is harder to ascertain for you due to your infant onset. I note that the facet joints are connective tissue and because this change in pain happened so fast for me, I guess I want to know if my UCTD is attacking those joints in my spine, or if this would have just happened anyway? I liked how you explained that AID inflammatory process is attracted to anywhere in the body suffering chronic pain syndrome.
(Yikes, I find in this moment, I'm taking a small gulp as I realise just now that I am possibly in chronic pain... It is hard to reflect that I was a full picture of health --after cancer of course--only 2 years ago. My Rheumatologist has only just confirmed UCTD in October {rather than write 'probable' as she did for a year} . And only TODAY has a letter arrived from the Dermatologist confirming that I do have urticarial vasculitis. Hearing about those radio frequency ablations and nerve blocks make me pause, Coco.. Let alone what you have ahead -- aminotomy & laminectomy. How ever do you do this?)
I'm confused by my lack of inflammation. Mostly my markers are within normal range on the very low end, but I read last night that osteophytes create bone spurs to fight inflammation, so maybe these osteophytes are in lieu of inflammation for me? I suspect I did have inflammation after my groin episode 2 wks ago. But my blood test was nearly a week later. It was the highest end of normal I've ever seen it recorded for me. But this other kind of joint deterioration seems to act differently.
I am not diagnosed with Ehlers Danlos (doesn't look like a fit, I don't think, I only have one hyper mobile joint in my thumbs), but you have that too??? That's awful, Coco.
All your management regimes and 'tools' descriptions are so helpful. And I'm glad you feel so strongly about the positive effects of Mycophenolate, because I do too. And I've completely gone off my theory that the pain came from the meds, particularly after LupusKaren's response below as well. Likely the pain I could have had has been tempered by the meds. Long live Mycophenolate!
Can't thank you enough for your response and shared experience.
So I've gone back and read, with new understanding, some of your back issue posts. And I remember now that yours began due to a fall from a height. So I'm surmising then that your Lupus has found and exacerbates that weakness, as well as what the Ehlers Danlos does to you, based on how the AID process is attracted to anywhere in the body suffering chronic illness.
I guess I'm realising it doesn't really matter if there was some kind of osteo deterioration happening before for me, this CTD will find anything, and in its over-reaction to try and heal, like a healthy immune system would, it actually just makes everything worse.
So it's more of a coming-to-terms time, I see. You are a bright light in seeing how that can be done.
Hello again: sorry for the delayed reply...yesterday was full of distractions, but was mulling over your questions, for which MANY THANKS: you & this discussion are helping me A LOT to come up with a relatively more convincing narrative for this side of my flippin health mix!
I think your latest reply, above, is SPOT ON! Seems to me, you have a real talent for clear, concise summarisation! I definitely struggle to be clear & concise (but 8 years participating here has helped me improve a bit, i like to think)
Yes: that 1st accident @ 7 really did permanent harm. And 10 years later i fell from a roof straight onto frozen ground landing in a sitting position bang on my coccyx. There is no question these 2 traumas are wedges in the piechart of causes underlying my chronic spine pain. I am convinced that if these hadn’t occurred, i could’ve coped lifelong (without my pain consultant & this surgery i’m facing up to) via conscientious lifestyle techniques & first line treatments + lupus meds....BUT i DO think you’re right: the complications of early onset active AID do predispose us to progressive musculoskeletal stuff that can cause plenty of trouble even without injuries (ostroporosis, osteophytes, synovitis etc etc)
Before i forget: my rheumy clinic isn’t the least bit “thrown” by my CRP & ESR always being within range...they just say that’s my normal, so we are alert to any increase even within range. Experts say that CRP & ESR are quite general markers of inflammation that can be altered by a lot of different factors, not just AID inflammatory process. Eg Some people like me with immunodeficiency disease may not show a raised CRP when we have increased inflammation &/or infection as the inflammatory pathways may not work in the same fashion as someone with an ordinary immune system, or may be absent entirely. That's why it is always essential for doctors (with any patient) to take CRP in consideration with other signs of disease rather than using it as a blunt instrument.
Am so glad you’re here, panda...am sure the way you analyse+articulate this stuff is helping loads of people (it’s definitely helping me)...am so glad if anything i contribute here helps you....
That makes tonnes of sense (and I like the way you put it) that for you "these 2 traumas are wedges in the piechart of causes underlying my chronic spine pain" You have made me think of times when I might have hurt my spine. In my late 20s I had a forceful fall onto my coccyx from a height of about 6 feet up. And about 10 years ago I slipped on the stairs and also landed on my coccyx. I didn't think that was a very hard landing at the time, but the pain was terrible for a couple weeks. So perhaps some initial damage has been done to put me where I am now.
Last night was awful again. No pain in the pelvis this time, just unrelenting lower back pain gnawing away. Curling in a ball is helping a little for about 10 minutes, then it comes on again right through it.
I am ever so grateful for you comments about ESR and CRP inflammation markers and how your clinic sees them in a normal-for-the-patient way. I'm pleased that my Rheumatologist has never really batted an eye over those and seems to keep her vision firmly planted in symptoms, anti-bodies and biopsy results. And yet is also looking at the broader picture for me and has done several tests to see if cancer could have crept in. She explained that neoplasms can cause all kinds of disruptions to normal body processing; and mimic mimicking diseases even, like SLE. My vasculitic reactions (which we now know that's what they were) sent her and a neurologist down paths looking for paraneoplastic syndromes. So, personally I'm grateful that my specialists seem to ignore ESR and CRP, but for anyone at the beginning stages this has to be a nightmare. GPs are trained to see that when something is wrong with auto-immunity there is inflammation -- always inflammation. But like with the development of osteophytes, my over-reactive immune system has gone and created these bone spurs to fight that inflammation so it doesn't even show up as inflammation -- if I have that right... Gheesh.
When I recently went with my husband to his GP appt, his GP asked casually how I was, I replied better than during cancer treatment, but I now had an autoimmune disease. "Oh! Well you know all about inflammation then!" And that is why I got so confused by it.
Super, super helpful Coco! You contribute enormously to my understanding of what's going on. I also feel an affinity to your xoxos. I'm originally a North American too. : ) xoxox
You make me feel like a million bucks, thanks‼️ And i think you’re a 🌟‼️ Keep Walking The Walk : i feel/think you’re TOTALLY on the Right Track 💃.....OXOXO
PS i can’t recall the nature of your cancer, but my malignancy is considered a revealing aspect of my musculoskeletal/connective tissue picture:
In my late 20s (decades before my luous was rediagnosed) a chondrosarcoma developed in the cartiledge of a finger tip joint after its acute hEDS subluxation due to a stupid accident which resulted in sudden severe onset persistence pattern inflammatory reaction. All the medics i showed it to for 14 years as it grew & grew + hurt & hurt told me: it’s just normal arthritis. Finally a v clever ortho surgeon diagnosed it correctly & amputated immediately (chondrosarcomas are amputated...no radio/chemotherapy)
My immunology clinic + the research rheumies i see for BILAG reviews tell me that so many years living with malignancy has interacted with stuff relating to my 3 primary conditions, affecting the composition of my blood in a way that accounts for lots of my manifestations etc etc
Wish i could meet up with you to hear your thoughts on any part you suspect your cancer & its treatment play in your health story...
OH! Now that is interesting -- a chondrosarcoma in your cartiledge. And -- what?! -- you've had an amputation too!!! Gosh, you trooper you. I mean it's obvious you already were, but to be prescribed a sudden lopping isn't easy.
I had breast cancer at 43 and when it was discovered at the end of my chemo that it was genetic BRCA1, I had 2 sudden toppings too with bilateral mastectomy, despite having very rare success with my chemo, which actually resulted in death of the tumour. My oncologist and breast surgeon were most proud, said I'd just need a small lumpectomy, then -- nope -- off with her breasts! It then meant I had to go back and get my ovaries and fallopian tubes removed as well due to BRCA1 causing ovarian cancer in 50% of us. And this just wreaked more havoc with the hormones.
So yes, like you, I am often playing cancer/cancer treatment/reconstruction-with-implants off each other as potential reasons for the auto-immunity now. That severe onset of a persistent pattern of inflammatory reaction in you would certainly make me suspicious too. My first theory was that because I would go neutropenic with every chemo injection, that my immune system trained itself to be in a permanent state of hyper-vigilance. And I think it now has PTSD and just cannot get out of the loop of over-reacting. I since have begun to think of other theories about implants, etc. But that first one still seems pretty plausible to me.
I suspect we could talk for hours and hours..
Thanks so much for your input on all of this. It's been a pretty distressing time.
How I can relate to your current problems. I have been on Mycophenolate since 2009, but this last year have had it stopped (due to stomach ulcers) 4 times so had to begin the restart, I was unaware of any back/pelvic issues with it, and certainly had no back or pelvic issues until this last 14 months.
I am in horrible pain in my groin, it was radiating out to my right hip, and am suffering intermittent bowel and bladder loss of control, and on this basis my GP ordered CT scan of my lumbar spine Jan 2018, report for information below.
At L3/4 moderate narrowing of the disc, no compression.
At L4/5 severe narrowing of discs and moderate posterior disc bulges, no compression.
At L5/S1 severe narrowing of the disc with marked degenerative changes in the adjacent vertebral body endplates. There is also moderate focal disc protrusion to the left of the midline which is in contact with the left S1 Nerve Root.
Unfortunately I found out earlier in the year that fractures of the Vertebra T7-T9 had been missed, as had Osteoporosis, I have recently had a DEXA scan awaiting results.
I am beyond frustrated that my problem has been going on for over a year, the groin pain is painful even to sit, walking around is easier, but I do have some moderate shooting leg pains as well, and as of this morning some leg Paresthesia in my knees, accompanied by patchy sensory numbness in my upper thigh right side and numbness in the groin (Mon Pubis area).
I have all but given up on my local hospital taking this seriously, my quality of life is deteriorating because I am sleep deprived, been up 23 hours with this, am tearful have to admit.
I have as a rule out purpose scheduled a private ultrasound scan of my pelvis, to rule out anything possibly gynae related, if that shows nothing, I am paying for a private MRI of my pelvis and groin area, to try to get this sorted.
I realise this is an essay and I am sorry, I am just hoping at some point it may help you and others, I am 58 years old, post menopausal, and this on top of all my other issues is proving pretty hard to deal with, and I am usually fairly laid back to matters of Lupus, but what is worse for me, is not knowing what is going on, and I am sure you feel the same.
I cannot take heavy weight pain killers either, because of my stomach sensitivities, which I am seeing a private Gastro about on Tuesday.
Let's keep in touch Panda, I will let you know what any investigations reveal on my part. I really hope you can get some relief in the coming days. Massive hugs.
Thank you, thank you for your response. I love an essay! : ) And could not agree more that the not knowing is the worst. Once I know something, I will deal. But when I don't it's awful.
I really appreciated your thoughts in my previous groin pain post too; and reflected on them quite a bit through the x-ray process and now as well, as there does seem to be something more spinal rather than muscular or side-effect oriented going on. It's pretty deflating to be honest.
But my goodness, you are still really in the throes of something terrible. I have had 'a' groin pain (only for a couple days) and I was in tears too. Like I just asked Coco, however do you do pain on such a scale for such a long time and still manage to take charge of your own care, know when it's not good enough and act on your own behalf? It's profoundly admirable.
I do have a base-line Dexa scan from 2013, after chemotherapy. I was to have them each 3 years, but because I'm on HRT, that seems to go against having them. Either that, or I just fell through the cracks and I honestly didn't think in my early 40s, at the time, it would matter that much. Now, though, I might request my second one these 7 years later.
Your search into gyne ideas is smart. I've actually had a lot of that ruled out over the last year since I had break-through bleeds while on HRT and had to have 2 trans-vaginal ultrasounds, and after extreme bloating through last year (which has since fully corrected with the Mycophenolate), my Rheumatologist ordered a pelvic ultrasound and my Oncologist ordered a CT. Those all came back normal. I also don't have ovaries or fallopian tubes, which should eliminate more on the gyne side of things for me. This is a smart idea of yours, to get all of that investigated, particularly since you're reporting the numbness, tingling and groin pain. Those seem like red flags actually and I'm quite surprised you're not getting anywhere with your NHS team with those symptoms. !!
I will be most interested to hear every bit of how you and Barnclown get along in the days/weeks ahead. Thank you for the hugs. Giving you massive hugs right back.
Thanks Panda. Oh I have been investigated, I had a Transabdominal and transvaginal scan 2017 all clear except for endometrium polyps, in Feb 2018 I had a hysterscopy to remove, biopsy normal. Was referred to Urogynae and no problems of concern there. I repeated a full pelvic scan privately with transvaginal scope in May 2018 all clear, and am having the same scan done again in a week. I had a hip and pelvic Xray done in January 2019 when my hip osteoporosis and osteoarthritis was noted, nothing else was reported, and yet here we are and I am still having problems.
I have my routine NHS smear test on Monday so that will be something else conducted, though I have not had any problems regards break through bleeds, just this groin pain, which seems centred around my Mons Pubis.
This is why I am so frustrated, I don't think I can be doing anymore right now than I am to find answers. Not helped by the two incidents of having things misdiagnosed or missed, in my mind I wonder what else have they missed.
I see my Rhuematologist in 10 days, so plan on asking her for opinion and help as well.
Oh good! I'm relieved to hear they did some decent investigating, despite not getting to the bottom of things. Interesting, I just had my routine smear last week too. We're in a bit of synch. : ) Mine was normal. : )
I remember someone mentioning on the 'groin pain' post, where we last talked, about Endometrium issues causing terrible back/groin pain. Is it worth questioning whether your endo polyps (maybe they have recurred?) could be part of the cause this? It does seem clear that your osteo and rheumatoid reports, let alone the fracture, must certainly contribute.
The following article explains how the pain works from an Endometriosis perspective. You've not been diagnosed with that? Just thought I'd share -- in case...
Thanks for the link Panda, very helpful. I do have a history of endometriosis, but once in the menopause it all stopped. I think this is related to my back, but my pelvic scan next Saturday will check out the endometrium anyway for signs of polyps. I know my spine is in a mess, and my L5/S1 protrusion on to the nerve, I believe is playing a part in all of this. I am doing recommended stretching exercises, applying heat, which gives some relief, but I suspect I am going to have to see a Neuorsurgeon, hoping my Rhuemy will refer me on, otherwise that is another private appt on the cards, I suspect either nerve injection or discectomy will be my only hope of full pain relief.
All best with that pelvic scan. Do let me know the results. I'm sorry to hear of such brutal pain routine for you. Mine does have some let-up and the groin pain is gone. I don't know where I'd be if there weren't let-up times. So I'm really feeling for you.
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